No point

harry01

I just feel like there is no point being alive. I did not want to ever even experience this. I get nothing out of living. No pleasure. 

I had a plan and it all went horribly wrong. I hate what happened to me. 

charlotte441

@harry01 what’s happened?

harry01

I can't even look after myself. My family don't believe me and I see no point in being alive.

Oxonlady

harry01, Why does your family not believe you? Do you have a physical or a psychological problem? Have you consulted your GP? Or any other professional?
I hope you feel you can share your feelings and thoughts with us. Life is always worthwhile, even when we don't see a light at the end of the tunnel for a while... An objective input from someone outside your family might help you see things differently. 

harry01

There is no name for what happened to me. There is no diagnosis. I've been treated as if I was fine for years. I've had enough. I think I put it down. I still can't physically brush my own teeth. Life was **** anyway with this 'disorder'. In the last two years I have had non stop pain I feel in my penis. I have had enough of living like this. 

Oxonlady

Constant pain is very difficult to live with and I agree that it's not taken seriously enough. People, including doctors, don't understand the full effects on the person who is in constant pain.

Do you suppose it's possible that you've had an infection? Viral infection in particular can leave you with chronic fatigue. Many people end up with M.E. after an infection. This happened to me in 1989 and I have suffered with it ever since as well as having other conditions. It's what is called "an invisible disability". Do you think that this could be a possibility? 

harry01

I read about ME and fibromyalgia. Both conditions had poor explanations. My one started from something I did to my back as young as 5 years old. Noone knows what happened. I then had these spasmic episodes at 21, then 25 and more recently at 33. It seems to tie on with my mental health. I got a list of garbage diagnoses from psychiatrists: schizoid personality disorder, body dysmorphic disorder. As much as my mental health was and has been affected the physical spasms, pain are real physical symptoms. 

Big part was it's it's i on movement. My muscles painfully contract. I had difficulty brushing my teeth even before I injured my arm. They didn't help me so I was powerless to help myself. 

Oxonlady

harry 01, could you speak to your GP again and ask to see a back specialist and a pain clinic? Maybe even a neurologist, who could investigate the weakness and spasms.
Your mental health is bound to be affected by constant pain but that doesn't mean that the possibility of a physical problem should not be explored. 

Good luck, I wish you all the best with this and I hope you can find understanding doctors. 

Chloe_Scope

Hi @harry01, it sounds like things are really tough at the moment!

How are you currently doing? I am concerned by your mention of a plan and I just want to ensure your safety.

janer1967

Hi @harry01 I am sorry you are feeling like this and it isd good to talk and we are here to help you.

We cant take the pain away but try and support you

Have you tried any alternative therapies like acupuncture or seen a chiropractor or physio, maybe they can help

Tori_Scope

Hi @harry01 I just wanted to check in to see how you were getting on today? 

Oxonlady

Hi Harry01, how are things with you? I hope you are coping. Please let us know how you are, when you feel up to it. 

harry01

@janer1967

I tried a lot of alternative treatments.

Massage therapy could have treated the problem but for my mental health. It's an odd problem but I was looking up 'functional disorders' as I had the greatest issues with pain with these spasmic episodes. You then lose an awful lot of movement. It's slightly odd. 

As I described I later injured my right shoulder and didn't have the movement to brush my teeth. This is still the case. To be honest it's the psychological impact of having that happen. I am happy with the label 'functional disorder'. I hope to get better. I have just had all of this together for 31 years. I think there may be relevance to the age I did the thing to my back and how children respond to pain. 

@janer1967 hi,

I went through a whole list of alternative therapies that involved the ones you mentioned. 

@Tori_Scope thanks for asking.

@oxenlady I just found the last few years incredibly difficult. 

Oxonlady

Harry01, Sorry to hear that you've had so many problems for so long. 

I do sympathise with regards to your shoulder pain. In the last six years I've had two bad falls and my left shoulder took the brunt of both. Scans have shown a combination of problems, including a torn tendon. In the last year the pain has got worse and if I try to move my arm it feels as if it's coming off the shoulder joint. Yet I've been waiting since last year to see a specialist. 

Have you had any scans on your shoulder or spine? Is your GP sympathetic?
People shouldn't be expected to live with chronic pain. 

Please let me know if there's anything I can help you with, I'm a good listener! 

harry01

Thanks @Oxenlady,

I never had a scan on my shoulder. I didn't care so much about the pain in my shoulder but it was the amount of movement I lost. Eventually when this dragged on it psychologically traumatised me.

You get no sleep, just severely stressed with pain in your mouth. Even puts you off eating. I presume it's stress but I weighed 12 stone but then lost 2 stone going through.

I lot of the response was psychological but you can't believe what you're experiencing. You can't separate the pain from the emotion that comes with it. I think the horror at losing the physical movement to do something so basic really added to it. 

Oxonlady

My opinion would be that you need to get the shoulder checked out, there must be a reason why your movement is restricted, Harry01. I can barely move my left arm and I know it's because of the shoulder injury. You could also have a trapped nerve. Lack of movement won't help in the long run. There may well be a physical reason that can be treated. If so, surely this would also improve your psychological state?
I would certainly be happier if I knew exactly what's causing my pain and limited movement. I'm due to see a specialist at the end of September. 

harry01

@Oxenlady I wish I shared your confidence in specialists. I can always ask but I did speak to several doctors at the previous practice from 2014-2019. And it would be s bit odd for them to withhold an option that would treat a problem otherwise. 

harry01

I saw physios. I use the shoulder exercises. It's helped but not nearly enough. The only other treatment I'm aware of is corticosteroids but I presume the evidence for them is weak since the GP would offer this to begin with. 

Oxonlady

Harry01, the infuriating thing with doctors is that a problem can be left to go on for months and years without a proper diagnosis and then they simply label it "chronic" and then they don't have to do anything about it!
To use the example of my shoulder pain again, it would not have become such a long-term problem if I'd seen a shoulder specialist in the past three years! I was refered to physio but I haven't enough strength and range of movement in the first place to do the exercises! And it can't be right to feel as if the arm is coming out of its socket!

It may be worth approaching your GP and asking if you can be referred for an assessment on your shoulder. Surely they can't just label it as a psychological problem? 

harry01

Well, whatever the cause they didn't discuss how I was going to invent movement to brush my teeth. And the nightmare, flipping I'll just euphemistically call it pelvic pain. That's flippin horrid. If I hadn't had that I could just about cope.

They had the police over because someone thought I was going to kill myself or something. I was puzzled but I just told them that it had been really bad. I'd go further but you're not going to mention that pelvic pain. It's so horrible. That's caused by this gingivitis but I don't understand quite how.

It was the worst thing I ever felt. 

Oxonlady

Unfortunately most people don't understand what severe, unrelenting pain is like. How it can get to your mind. 
I wish I could help, Harry01, because I know what it's like to be screaming in pain, only to be told "be quiet, you are scaring the other patients", not "let's see how we can help you"! And that was in A&E... 

Oxonlady

Harry01, you mentioned gingivitis. Do you have a good dentist?
Can you train yourself to brush your teeth with the arm that doesn't hurt?
I can recommend Gengigel mouth rinse, it's aimed at problems with gums, including gingivitis. 
Take care. 

harry01

Hi @Oxenlady I've got as far as I can in using my left and right arm to brush. But I cannot reach to press along the gumline around back teeth. From 2014 I have gone from being able to clean 40 percent of my mouth to maybe 80 percent. 

I cannot say that my dentist is good as I have had this since 2017. They simply believed as did the doctor that I was physically able to do it. I've used mouthwash and as much as I physically can, interdents and floss but nothing replaces the mechanical action of brushing and along the gumline. Just as with the doctor I told them repeatedly what my physical issue was but they ignored me. 

Thanks

leeCal

How would it be if you used an electric toothbrush?

harry01

@leeCal I use this too. Thanks. 

Cress

I'm sure I saw something about sonic tooth brushes, that work without having to be in contact with the tooth itself, still gotta shove it in there, obviously...

Now if they were dentures...glass of water and a couple of fizzy tablets would sort you out...not really helpful, sorry...
Hope you find a solution. 
Must be maddening...

Cress

According to Sonicare...they work at a much higher speed agitating the fluids in the mouth to reach where a toothbrush cant ie between teeth, beneath the gum line and crevices....

chiarieds

Hi @harry01 - sending this as perhaps it might help. Just to let you know, I'm a physio (tho I haven't worked as such for a long time). Perhaps you may have been taught this, so apologies if you already know.

Try standing with your left foot slightly (less than a couple of steps) in front of your right foot. Lean forward a little, putting your left hand just above your left knee to give you stability. Let your right arm hang down, then, using gravity, just move your right arm backwards & forwards. You can also try making a small circle with your arm. Don't increase this if it causes pain....just do gentle motions that you feel comfortable with. I've used this in many patients, which my colleagues did not. I've also 'used' this on myself with 2 episodes of a partially frozen shoulder.

The key is not to do anything which causes pain, as this then becomes a vicious cycle, & causes more pain.

Just to add, my right arm was damaged by another when I was about 20. I learnt to write very slowly with my left hand, but brushing my teeth effectively was one of the hardest challenges.

As far as your penile pain goes, this needs addressing, as it must be causing so much distress. Please consider phoning your GP about this. No-one should suffer such a thing silently.

harry01

Thanks @chiarieds.

Your advice makes sense. The physio I saw previously told me to 'push through' the pain. Um... 

Thanks for engaging with this. 

Chloe_Scope

I imagine that didn't help at all @harry01! When I first went to the pain clinic I was told to accept my pain... because somehow that fixes it?! I hope your week has been good so far.

Oxonlady

Harry01 and Chloe_Scope, contrary to what some doctors and physios believe, pain is not a natural state for the human body. I know for certain that my body only complains with pain when something isn't right.

It's just laziness, an uncaring attitude and lack of an investigative spirit among medical professionals that leaves many of us in pain. 

Often they fail to investigate pain properly, it doesn't clear up and they then label it "chronic". It infuriates me because doctors just say they can't do anything about chronic pain! 

Harry01, you have weakness as well as pain in different parts of your body so proper investigations are warranted. Please ask for the help you need and are entitled to receive. 

chiarieds

Well, some physios even hang around a certain internet forum trying to offer a little advice about pain (see above), but I agree it's not a natural state for the human body @Oxonlady

@Chloe_Scope - this acceptance concept is part of 'Acceptance & Commitment Therapy' that psychologists & others have used for some time for those with chronic pain. The following full paper is eminently readable, & I related to several of the women's quotes. Please see: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671308/

There are more up to date studies; this from King's College, London: https://pubmed.ncbi.nlm.nih.gov/27397934/ & this published last year: https://pubmed.ncbi.nlm.nih.gov/31200768/    etc.

But being told to 'accept' pain without advice, is totally unacceptable!

What also bothers me is people being told to push through the pain, as with @harry01 , whom I'm hoping will contact his GP about his other painful problem.

Oxonlady

Sorry, Chiareids, my comments about doctors and physios are not personal, I have had some really bad experiences with both professions... 
Just to give you one example, I kept saying, at one point, that I had Cauda Equina but absolutely no one listened. They just kept saying that I had chronic back pain. 15 months of agony later I collapsed and they operated, but they had left it so late that nothing below the waist works properly. This has happened twice! That's why I say that pain needs to be investigated properly. Sorry if I sounded harsh...

That's why I've suggested to Harry01 to get a second opinion. 

harry01

@Chloe_Scope sounds bad. What do you suffer from Chloe? 

I've been referred to some persistent pain clinic. I have left no information out and spoke to the doctor yesterday.

I don't put a whole lot of weight on doctors, specialists or anyone. I think we don't know. I saw an appalling programme in channel 4 that if memory serves me correct said that 'chronic pain' was the pain system malfunctioning or something like that. I mean that would surely be complete nonsense description to conditions where the nervous system is doing it's job: reporting a problem. 

Happy to talk about this. 

chiarieds

@Oxonlady - no apology needed; rather me apologising for some in my profession, & I am saddened to read about your diagnosis. You didn't sound harsh for one moment. Cauda equina syndrome is a dreadful problem, & I'm very sorry indeed that you weren't listened to.

I was always politely listened to, but, whilst I was 'eventually' diagnosed with Ehlers-Danlos Syndrome (after I'd researched & found out what my family had), a neurological problem, Chiari 1 Malformation (which I thought our family also had), couldn't possibly be associated with this.

It was later worked out by a USA geneticist that the chance of the 2 occurring in a person was over 3 million to one against, therefore there had to be an association.

I spent nearly 10 years trying to raise awareness of this association here in the UK, backed up solely by a New York neurosurgeon. By a bit of synchronicity he had started to recognise Ehlers-Danlos Syndrome (EDS) in some of his Chiari patients at the same time I thought our family must have both disorders, & therefore this may affect others with EDS.

Pain & everything else does indeed need to be investigated. When I started researching, it was more to find out about the severe breathing problems our youngest daughter had had. My eldest daughter asked me to look into this some 16 years after we'd lost her little sister. So yes, getting things right matters.

On another thread I also suggested harry01 seek a 2nd opinion, & I am pleased he has spoken to a Dr. & is going to be referred to a pain clinic.

Oxonlady

Hi chiarieds, I'm sorry to hear of the loss of one of your daughters, even if it was 16 years ago. As a mother myself, I know that the loss of a child is a hard thing to bear... Did your daughter have a respiratory ailment?

I have terrible SOB but so far the doctors haven't quite worked out why. Some are telling me that I have heart failure and others disagree... 

chiarieds

Hi @Oxonlady - youngest daughter had severe breathing problems at birth, & had to have a tracheotomy at 1 week old. Her Drs didn't know the cause of her problems. It was only when I looked into this in 2000 (by then our son had a computer), that I thought this due to Chiari 1 Malformation. We had lost her in 1984, aged 23 months.

I do hope you find out why you get SOB; you've had enough problems.

Cher_Scope

I'm sorry about the loss of your daughter @chiarieds That must have been a difficult time for you and your family.  

@Oxonlady is your SOB still being monitored?

Oxonlady

Hi Chiarieds, thank you for asking. I'm under the Royal Brompton hospital but I have not been seen since last year. I'm due to be seen in the next couple of months but so far I don't feel that they've taken it seriously enough. 
I'm feeling generally very unwell, I'll mention it to the rheumatologist when I go to the hospital tomorrow. I can barely move... 

Oxonlady

Sorry, Cher_Scope, my post above should have been addressed to you. I'm so exhausted, I can't think straight... 

chiarieds

Hi @Oxonlady - I'm so sorry you're feeling so bad, but am pleased you're seeing a rheumatologist tomorrow. My last rheumatologist said my neurological problems were worse than my rheumatological ones, & normally he would send me to his neurology or neurosurgery colleagues, but I'd already seen them. So he asked if he could give me a neuro exam, & found I had hyperreflexia (+ ankle clonus on one side). He even was able to elicit reflexes which are not normally present (& which no-one else had tested for). He concluded all 4 limbs were affected, & that it was obvious to him that my problems were therefore coming from high up, either from the neck or the brain itself. He totally believed, with our family's problems, that Chiari 1 Malformation was likely.

I hope you see a rheumatologist as helpful & understanding as him. Please say how you get on.

Tori_Scope

Good luck at the hospital tomorrow @Oxonlady. Let us know how you get on Sorry you're so exhausted at the moment, I hope you manage to get some rest. 

Oxonlady

Thank you, Tori_Scope. 

Oxonlady

Thank you, Chiarieds, will do. 

harry01

Good luck, @Oxonlady

Oxonlady

Thank you, Harry01. 
I hope you are not in too much pain today. 

Cher_Scope

Good luck with the rheumatologist today @Oxonlady
Let us know how you get on and be sure to mention that SOB.  

janer1967

Good luck with the appointment

Tori_Scope

How did you get on @Oxonlady?

Oxonlady

Hi Tori_Scope, Chiarieds, harry01, janer1967 and Cher_Scope, thank you all the appointment went well. I've only just got back home, it was a long, tiring journey through London's heavy traffic, both ways.
The rheumatologist was very nice and kind. He said that although nothing much can be done for me, he'll arrange for scans on my shoulder and elbow and I also had blood tests today. At least he's being thorough, whereas the last two rheumatologists weren't really very interested, they just said "you've got Fibromyalgia so there's nothing we can do". And both had added, at the time, that "Fibromyalgia is all in the mind", something I of course do not agree with!

I now have to wait for the results of my blood tests, it shouldn't take too long. 
Meanwhile I'm glad to be home and resting! Wishing you all a pleasant evening. 

chiarieds

Hi @Oxonlady - You must be worn out, so thank you very much for updating us. What dreadful statements about fibromyalgia; I would have hoped rheumatologists, of all people, would have a better knowledge & understanding.

I'm pleased this rheumatologist is much better, & is being thorough with further testing. Did you mention your problems with getting SOB?

I hope you can relax & unwind a bit this evening if possible; I don't imagine your pain levels are great just now. Take care.

janer1967

Glad it went ok and they are looking into tests and scans 

Have rest now you are home 

harry01

@Oxonlady 'all in the mind'. That's sad. Actually scientifically illiterate thing to say. And where's their evidence? 

Thanks for getting me to ask about my shoulder. I will also push to point out all physical issues. 

I was hesitant because I didn't want them to deny my general movement based issues and make it about my shoulder only. 

Oxonlady

Hi Harry01, thanks for getting in touch. I've been feeling increasingly unwell so it's nice to hear a friendly voice as it were!
I saw the rheumatologist on Friday and he's arranging scans for my shoulder and elbow but there's a three-month waiting list. Constant pain and lack of movement can be really demoralising, that's why I suggested to you that you may also need a scan.
I started taking antibiotics on Friday evening and I'm starting to feel human again. My blood test results prove that I've got an infection but doctors don't usually listen when I tell them... 

I wish you well and good luck in trying to address your problems. I'm very practical so I always look for solutions! 

chiarieds

Hi @Oxonlady - I always say a person knows their own body best, so I'm pleased you're on a course of antibiotics, & at least that is proving helpful. I'm sorry you have to wait so long for your scans tho.

@harry01 - have you tried the gentle shoulder exercises, which I hoped may at least help that aspect of your pain?

Oxonlady

Hi Chiarieds and Harry01, I try gentle shoulder exercises when the pain allows any movement but quite often even the slightest movement hurts too much... 
It always impresses me and not in a positive way, how doctors think they know all about me within ten minutes of meeting me and yet they don't take into account my decades of experience in this body! 

harry01

@chiarieds yes. I have been experimenting with them, thanks. 

newborn

Hi I don't  have the slightest idea if your particular pain likes or hates heat.  I have found ice packs help some, but most like electric heating pads, in particular the infra red ones, but any. They aren't  that dear from arg*s or other places. I means you can watch t.v., or go to bed, not needing to keep refilling a hot water bottle.   You set the temperature  and choose the time, but it turns itself off after a while so it doesn't  matter if you fall asleep. 

Tori_Scope

I'm sorry about your previous negative experiences @Oxonlady, but I'm glad your new doctor is being thorough.

Hearing that you've got a 3 month wait must be frustrating, but at least you're on the antibiotics now. How are you feeling today? 

Oxonlady

Hi Tori_Scope, I hope you are well.

I feel a lot better on the antibiotics, thanks. Still feeling very tired, will have to go for a nap soon. 

I am disappointed with doctors because the majority have no imagination or an investigative mind. If the run-of-the-mill blood tests are normal, they look no further, despite the patient feeling unwell or being in pain. So from now on I will avoid the medical profession as much as possible!!!! I have no faith in them.
If the NHS cared, we wouldn't have to wait in pain for months to have scans done... 

Tori_Scope

I am well thank you @Oxonlady.

I'm glad you're still feeling a little bit better at least.

Yes, it can be disappointing when doctors don't take the time to investigate further. I often hear people saying that they have to be their own advocates and fight for the treatment and tests they need. Your lack of faith is definitely understandable, but I hope that you do manage to find a team of doctors who are able to help. 

Is there anything you can do whilst you're waiting for your scan? 

harry01

@Oxonlady I feel the same way.

Yep, agree completely. I'm sorry they've treated you like that. 

Feel free to tell us here. There should be an open discussion about this. I hope that you get the treatment you deserve. 

Oxonlady

Hi Tori_Scope, not really, I'll have just have to keep taking the painkillers and engage in something that gives my brain something positive to think about, which is my Art Project! It has been very therapeutic for me the last four years. Thank you for asking. 

Oxonlady

Hi Harry01, how are things with you today?

Just to give you an example of how much doctors don't know, even though they think they do and how they simply don't listen to the patient : I went to A&E a couple of weeks ago, feeling very unwell and they did some blood tests. My white cell count was very high, yet they dismissed it, saying it's because I'm on steroids. I kept saying that I must have an infection, as I felt so unwell. Had they given me antibiotics then, I would not have continued to deteriorate to the point where I could barely move.
In any case, I've improved on the antibiotics, though I'm still worn out. 
Next time, I won't be inclined to listen to the doctors! 

Tori_Scope

Ooh, what kind of art do you do @Oxonlady? That's a great way to keep your mind busy.

Oxonlady

Hi, Tori-Scope.
I paint my canvasses and then I give them a 3-D effect in a special, unique way that I have invented myself. I have a few more canvasses to complete and then I hope to find a way to exhibit them. As I'm housebound, this might be difficult to arrange but I'm determined to share my artwork with the world once it is completed! 

Tori_Scope

Very cool @Oxonlady, that sounds great! 

I'm sure you'll find a way, especially once more venues start to open. Have you posted pictures of them online before? I'd love to see!

janer1967

@Oxonlady your work sounds interesting, maybe somebody could take them to craft fairs or something for you or you could advertise them on a selling site for collection only

Oxonlady

Hi Janer1967. I will never sell my canvasses! I have a lot of emotional energy invested in them and they are the subject of a book I'm writing!
It would be wonderful to exhibit them so that people can see this unique work which will not be found anywhere else in the world. But I'll never sell them. I need them around me to cheer me up and remind me of my long, arduous journey to get to where I am now! 

janer1967

Ok sorry got the wrong end of the stick when you said about exhibiting them

Oxonlady

Hi Tori_Scope, if you Googled my real name you'd probably see some of my canvasses come up... But I'm not sure I want to give my name out on this thread... Though it might be ok, I don't know.... 

Oxonlady

That's ok Janer1967, I know you were trying to help. 
I know that almost all other artists sell their work so I do understand your suggestion.
I just couldn't bear to be parted with my unique collection! I hope that doesn't sound daft or selfish... 

Tori_Scope

We don't encourage people to share personal details on here @Oxonlady so I understand, don't worry!

You're always welcome to post whatever you're working on on the community if you fancy it. Lots of people share their arts and crafts on KaleidoScope. 

janer1967

@Oxonlady Maybe you can find some local art gallaries or exhibitions or even local cafes and places thst weould display your work for a period of time.

I am sure they would be willing to help collect them and display

Some places struggle with being able to afford artwork to display to make the place look better

Chloe_Scope

This sounds great @Oxonlady!